Two questions for all

1, What do you think caused your EM?

2. Does anyone here use pain management?

Im doing more research and there is a good chance that my atenelol meds that I been taking since approx 2001 may be the cause. I developed EM in 2008. Im on a new med which will take time to see if there is many difference.

I take tramadol which doesnt seem to be doing much anymore. I asked my doctor for percocet to see how I did with them and how it worked. He said he could only give me 12 5mg pills. I took one and an hour later took another one. I had no issues with any weird feeling, I felt pretty normal and it did help a lot. Heres the deal, I need pain relief. I went to the zoo last weekend with the wife/daughter, shes 11. It was around 1pm. Normally do things early morning because the mornings seem to be good for me, most of the time my feet dont hurt. Anyways they started hurting pretty good when I got there, I made a choice to rent a wheel chair because I had a bad flareup and knew it would be hard walking around because this zoo was huge. That really brought me down. Until they come up with a cure I want to live life. If I had the percocet that day I could have walked around. The issue is my doctor cannot write me monthly scrips, there has been such an abuse of these drugs that most doctors dont want to write more than a 4 day script, my doc told me I would need to go to a pain management place. This can be very expensive without insurance. Its a shame that people who actually need these pain meds cant get them because of so many junkies abusing them. Just wondering how these pain management places work.

Dear Jimm,

I am sorry that you had the experience and the upset at the zoo, I have those feelings a lot - about how my life is "ruined" by the EM- I am recovering from a life-long eating disorder. I had chronic low sodium and one of my docs thinks that my low sodium levels damaged my sodium voltage channels. I never ate normally at all and last July when the pain started from what I would find out 11 months later was EM, I was so scared that I decided to try to recover - I went frm abut 75 pounds to about 105 and I am stronger and everything would be great if I didn't have the EM. I have been really sad about this during this week as I approach my 1 year anniversary.

Anyway, I am curious as to where you live that the meds are so controlled. I am in the USA and I can get any medication without restriction Is it because you dont' have insurance that they are so strict? I agree that insurance or not if you have a real disease which warrants the pills you should be able to get them.

Please keep us informed. I will be thinking of you.


I live in south Florida, capital of the pill mills.

Jimm I really can’t reply to your questions, partly because I am not living in the States but also because it is impossible to know where EM came from, once they have ruled out all the platelet disorders and some other diseases which have ‘flushing’ as a common side effect. In my case it could be Raynauds, or hypothyroidism, recent surgery, taking ciprofloxacin, exposure to chemicals or just my body deciding it hates me!

Jordy, don’t be sad as you come up to the end of year 1 with EM. Look on it as an achievement - you have done so well and as for the EM it’s early days and you can look forward to improvement as you learn more about medications and ways to manage. There’s a lot to be positive about:)

Best wishes

I live in the US in Washington state and they are very strict here. My doctors wouldn't prescribe anything to help with chronic pain only acute pain. For chronic pain I was sent to a pain clinic where I still go once a month. I had to sign an agreement stating that I couldn't get a prescription for pain meds from any other doctor and in an emergency where more may be required that doctor must first contact my pain doctor. It is sad that it has come to this state where everyone is treated as an addict. I get regular urine tests at my pain clinic to make sure I am not abusing them. Even with their help I have yet to find any meds that make enough of a difference to lead a half normal life. I don't know if taking more or stronger meds would be of any help to me but they are not willing to prescribe them to me any way so I just deal with what I am delt.

I am looking for a new clinic at present as they have frustrated me to no end!!!!! They agreed 6 months ago that lidocaine infusions could be of help to me and said they would set it up. It has taken 6 moths of me going in once a month asking about the infusions only to be told they are working on it. I was so excited because at my last appointment they told me that they had it set up and that it would be the 24th of this month! They called to inform me my insurance wasn't going to cover it so I called my insurance company myself. They said if they would submit a pre authorization for the procedure it would be denied but after that if they would submit documentation that I have tried all other known treatments that it would be approved in appeal. I told my clinic what they had to do and they just said....sorry we can't do it at all now!!! we don't have the staffing for the procedure and it was called off!!!! All because they didn't want to deal with the hassle of the paper


This wasn't the first time I had this problem with them. I wanted to try Lyrica last year so they prescribed it but my insurance stated they needed a letter from my doctor stating why I needed the meds. I told my doctor at the clinic and he said he would write it. One month later at next appointment and it was never done. I asked again and he said he would... another month and still not done. Two more months and nothing. I finally asked a different doctor and they had the letter written in less than 24 hours and I had my Lyrica! It didn't help me but at least I had the opportunity to try it!

Sorry about my long rant. The dance we must do to get the treatment we need can be so frustrating!!!!!

I like to think if you can find a decent clinic they can be a real asset in your treatment. I hope you find one that can be of some help to you.

Take care,


Dear Alina,

I just read your post about your experiences with the doctors and the pain clinic! I think it is awful that they can operate such a poorly run practice. I am so sorry that you have to deal with that. I have had my share of horrible doctor experiences here in NYC but they were more about the awful personalities and inappropriate behavior- I consider myself fortunate that I would have access to whatever pills I would like - I hope you can find another clinic.